| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | So I am doing well for the most part. Today I am just really down in the dumps. To the point that if anyone looks at me wrong I am going to cry. I can't handle these sores that pop up in my mouth and then go away. I am glad they go away, but I wish they would never come up. ARGH! Work is stressful, and I often forget that i can not talk as fast as I used to. I have to slow down and really think about what I am going to say. I have no idea why all of a sudden I am having these emotions pop up. I hate it. Thanks for letting me vent.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Angelia, that's what we're here for - plus a few hugs if you need them. Hopeing those sores appear less and less and someday, you will notice that they aren't showing up at all anymore! Hugs Angelia! Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Angelina,
We can all relate to having those days where we are down in the dumps, and I know it stinks when these days happen. I do just what you are doing and vent then I go to bed. As most of the people here know...I am an advocate of venting and letting yourself have those crappy days because they are going to happen. I bet you will wake up tomorrow and feel like a new woman. When you leave for work in the morning, put on some good music, put the windows down and sing. That's what I do!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 216 |
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia, I always have dry mouth until I get to talking too much. LOL Then I slobber and need a towel almost. Poor person that is in front of me gets a shower from a dry mouth. It gets frustrating.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Oh Angelia, wish I could give you a hug. Hang in there girl, things will get better x
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | Angelia, can only but imagine how you might feel & what you are going through, but these days my imagination is pretty good, hugs & cuddles from me too....
J
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks guys. Things are going well now. Actually two weeks ago I decided to start working out in the mornings. I am now walking two miles during the week and four miles on the weekends. I feel so much better than I ever have before. I have a lot more energy and my spirits are high like I can handle anything. I wish someone would have told me to do this a year ago. Oh wait they did, I just didn't believe them.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 |
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | I see you have done a 4 mile walk not long ago Angelia. Best medicine for down in the dumps Will take my knee pain meds soon and see what I can do
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Angeleia: Thanks for posting your feelings. I've been hesitate to voice my worries, but you've made it seem a lot easier.
You, all of us, have been through a lot physically and emotionally, so accept those down days. Having friends who have had the same experiences really helps to lift your spirts. I'm glad you came here.
It might also be nice to look for a support group locally. Here in VA, we have a support orgization which has all different types of classes. I'm thinking about signing up for some so that I can meet other cancer survivors. You may want to look into that also.
Congratulations on your clear 7/9 Pet Scan. Try not to worry for awhile. Please continue to share when you need to... Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Mar 2009 Posts: 48 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2009 Posts: 48 | I know that your post was a couple of days ago and this may be corny for you but I thought I would share, whenever my mom would have a day like that I would sing the song from Charlie and the Chocolate Factory-Cheer up Charlie. It is something that she would say to me and she told me that if I wasnt there and she had a bad day she would think of that and it would make her smile.
It might not be a song it could be just about anything that you could think of just to get you over the hump. I witnessed first hand the depression and anxiety that comes along with this disease. It is relentless, hang in there!!!
26 Mom 48 diagnosed Sep 08 Stage IV SCC full glossectomy, neck dissection traech and peg Nov 08 35 radiation treatments and 3 chemo Mar 09 mets to lungs Started Erbitux 3/09/09 06/26/09 mets to rib Stopped Erbitux 6/26/09 Start erbitux/taxol 7/06/09 Started Hospice 7/24/09 Passed away 8/09/09
| | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Angelia I'm glad to see your are doing better. You may doubt me but, if you go back and read your posts you will see the same progression and success that I have. It ain't easy!! It's different for every person but, we are all here for you!! Vent, laugh, cry spit or whatever...it's all part of recovery. If just one thing is better tomorrow than today that is a good thing. If I can offer any help or suggestions just ask. Cheers, Mike
Last edited by Dr. Mike; 08-24-2009 06:38 PM.
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hey Mike longtime no see how the hell are you?
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Cookey As they say in the woods, " Busier than a 3 peckered owl!" Glad to hear from you now give me back the owl.. Hehe Cheers, Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
| | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Hey Sandy, Where is Va are you? I am in Roanoke, Va Just curious. Good to hear from you Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Debbie: It would be nice if we were closer, but I'm just outside of Washington DC. However, talk to your onocology nurse; she probably knows of some support groups in your area.
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | My youngest son's best friend is finishing up his residency in Columbus Ohio and then him and his wife are moving to Roanoke Va permanently, The Hospital there gave him a great offer.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Dr. Mike, Thanks for that. I know that I continue to freak out every time I have a little sore or even sometimes a sore throat. I don't want to bombard my dentist with every little thing. I have gotten to where I will wait a few days and see how it feels. Most of the time they are gone within three days. some of them take a week. I have another 2 month check in two weeks and I think I get more nervous the closer it gets. I know, I am craxy. Life at my house has been crazy as well. Have not been on here as much since school started back and I am back to work.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Angelina...first of all, you are NOT crazy. Normal? Yes...crazy? No....we all get nervous before are appointments in the beginning. We need time to have several appointments when they tell us everything looks good before that nervous feeling goes away. I'm still nervous, that's for sure!!
Just remember you have gone through a lot and you are a strong woman, give yourself some credit. How are things going at work for you? I hope nobody is saying stupid things to you anymore...I'm going to need to write a letter to them if they keep it up!!
Just keep your held high and remember that you're awesome:)
xoxo
Last edited by suzanne98; 08-30-2009 07:01 AM.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Work is wonderful. I am so busy that the days go by so fast. I also got a promotion. I am not the department chair for special ed at the school and am supervisor of 7 other special ed teachers. When do I ever get to do "my" job which would be actually teaching, who knows. I love it, but am exhausted at the end of the day. My ear has started to hurt again and O have had off and on pain in my jaw area. So when I got back for my check I will let them know. Kind of make me nervous, but I try not to think about it.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I think I will blame the same problems on a weather change. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | It's the weather. LOL. I hope it is that easy.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | "OCF Down Under" Supporting Member (50+ posts) Joined: Jun 2008 Posts: 51 | Way to go....maybe I should try that to get myself up and out of this terrible depression that has hit me lately.
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Congrats on the promotion. I personally always blame the weather. If it's cold and rainy I always feel like crap. Nothing like sitting in the warm sunshine to make you feel better.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
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